The cost of caring

Jonathan
Jonathan Parsons
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Port Rexton family says govt. policy has forced them onto social assistance

Rodney Miller of Port Rexton just wants to be able to take care of his wife, Beth.

Rodney and Beth Miller, at their home on Monday. Rodney says the government’s home- care policy doesn’t make sense for people in their situation because it’s making him choose between work and social services in order to care for his terminally ill wife. Jonathan Parsons photo

Beth was diagnosed 15 months ago and is now in stage-four lung cancer. She is in what is called the “end-of-life program”.

“She hasn’t got that much longer with us,” Miller told The Packet.

A home-care worker, provided through the Provincial Home Support Program, helps out for 20 hours a week.

Miller has nothing but praise for the home care worker, and local health care providers.

“The public health nurse and the social worker from Clarenville are the best in the world. They went over and above to help me — physically and mentally.”

However, the situation is made more stressful by financial worries for Miller.

Until recently he was getting unemployment insurance. Now that’s run out but he’s unable to go back to work because of Beth’s health. The 20 hours of home care does not allow him to leave the home to work and there are very few options in the area for him to apply for.

What frustrates Miller is that the provincial home care program does not allow him to be paid to be his wife’s caregiver.

He was told by social workers that spouses who live with their partner are not eligible to provide home care.

“Goodness gracious! That’s why we get married and have children — we live together in the same household,” said Miller.

According to the Department of Health and Community Services, spouses cannot be paid caregivers because they are expected to provide this type of care anyway, in their role as a husband or wife.

Other family members, such as sons or daughters, would be able to be paid, to provide care.

Rodney says he doesn’t understand the department’s policy.

“Right now I have to go on social assistance, which is degrading to me because I worked for 31 years and never been on social assistance, I don’t know what it’s about,” he said. Rodney previously worked as a manager in a Northwest Territories airport.

He says it doesn’t make sense.

“I would be the best provider for my wife; I know her the best.”

And it isn’t a matter of qualifications. Rodney is just as — or even more qualified — than anyone else who would normally fill the position.

“Me and Beth have been together 29 years, we got married again on our 25th anniversary, and we love one another. And if we got divorced, they could look at me as a home care worker and pay me? It’s so crazy.”

The situation is causing the Millers financial and emotional stress.

“Our income right now is next to nil and I have to watch somebody else get paid for the duties I could be getting paid for; instead I have to apply social services myself,” said Rodney.

Social services will only account for a very small amount of what they actually need to live in their own home.

“We’ve got no income coming in outside of Beth’s little bit of disability which will cover our light bill. So we can’t eat for a month.”

He says he battles with depression and their current financial situation combined with the cancer is hard for his mental health. But he isn’t just speaking out for their own needs — which are many — Miller wants to make sure others aren’t going through the same thing.

“It’s not just me. I know of four people in the Port Rexton area who are in the same boat I’m in … I’d like to speak on behalf of these victims … I think a little bit of compassion could be shown shared with the people that are dealing with cancer on every level.”

Miller says he is completely exasperated and has no other option but to go public with his plight.

“Since my wife took sick 15 months ago, I had not the gumption to do anything, only my main primary objective, take care of her and her best well being.

“But when you get shut down at the government level it is so degrading.”

He’s contacted both provincial and federal government looking for help, admittedly not a fan of looking for a handout, but they are left with little other option.

While he hopes his local MHA will help in the near future, he says promises of changes in funding aren’t doing much for them in the short term.

“We don’t need help tomorrow, we need it today,” said Rodney.

Rodney and Beth say they are considering leaving their home and moving out of province, to Nova Scotia, to live with their son and his family.

A GoFundMe account called “Beth’s medical fund” has been started by a family member to help them with their living costs.

Anyone who wishes to donate can go to https://www.gofundme.com/6km9629g.

 

jonathan.parsons@thepacket.ca

Twitter: @jejparsons

 

 

Organizations: The Packet, Department of Health and Community

Geographic location: Port Rexton, Clarenville

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Recent comments

  • Cecilia Bishop
    February 20, 2016 - 11:25

    Bless you Both..So much stress,certainly don't need this as well..I had the same struggle,09, My husband was diagnosed with esophageal cancer,had to leave retail after 10 years, couldn't get a lay off,because it was there busy season,so got sick leave,15 weeks, when that was finished, I couldn't continue on EI,because my reason for leaving work, i didnt qualify and if I appealed the decision,I would have to pay back the sick leave..since I actually wasn't the one who was sick .After 22 months being sole caregiver , public health told me I could have home care..this was the night before My Husband went to hospital..Nine days later he passsed..we were married 35 years, he was 57 years old..It was a struggle, and certainly didn't need the extra stress..

  • Cecilia Bishop
    February 20, 2016 - 11:24

    Bless you Both..So much stress,certainly don't need this as well..I had the same struggle,09, My husband was diagnosed with esophageal cancer,had to leave retail after 10 years, couldn't get a lay off,because it was there busy season,so got sick leave,15 weeks, when that was finished, I couldn't continue on EI,because my reason for leaving work, i didnt qualify and if I appealed the decision,I would have to pay back the sick leave..since I actually wasn't the one who was sick .After 22 months being sole caregiver , public health told me I could have home care..this was the night before My Husband went to hospital..Nine days later he passsed..we were married 35 years, he was 57 years old..It was a struggle, and certainly didn't need the extra stress..

  • Mary
    February 13, 2016 - 06:16

    I know how these people feel. My husband died of lung cancer on Jan 25 2016 and I was the sole provider. I couldn't even get homecare because the Public Health Nurse didn't thing my Husband fit their criteria.

  • Mary
    February 13, 2016 - 06:16

    I know how these people feel. My husband died of lung cancer on Jan 25 2016 and I was the sole provider. I couldn't even get homecare because the Public Health Nurse didn't thing my Husband fit their criteria.

  • Kelly
    February 13, 2016 - 00:23

    There are so many out there in the same situation and I agree with him. When a person needs somebody 24 hours 7 days a week the husband/wife can not work. I personally know of a woman who was diagnosed with stage 4 throat cancer. She is recovering and showing improvements but she is in a "chemo fog" which makes her behave like a 7 year old child. Her husband who worked his whole life making a very good living has no other choice but to stay home with her. He said there is no help out there for them. He is going to lose his car and then he will be faced with other challenges like how to get back and forth to appointments etc. Something needs to change, the government is so quick to throw money away. Put it where it is needed, right here in Canada where ppl are in need.

  • Jennifer Dooley
    February 12, 2016 - 16:42

    I wish government officials would take their head out of their a**, they will pay assistance to this family to live AND pay for home care when all they have to do is pay this guy to do the job....government saves money, this man keeps his dignity and this woman gets to spend whatever time she has left with the person she should be with, not a stranger......it's not rocket science.....

  • justin case
    February 12, 2016 - 14:38

    Rodney...too bad you and Beth are not Syrian refugees. You would be looked after 24/7. Shameful what citizens of this province and country have to endure considering your contributions to government coffers year after year after year. Seems when you contribute zero you reap all the rewards. You got to shake your head. Meantime, I wish you both well on the road you have to travel.

  • John
    February 12, 2016 - 13:18

    My heart goes out to you both Rodney and Beth. Rodney whom has loved and cared for his wife for near 30 years is needed now by Beth more than ever; if not now when? Rodney is the exact type of person the local health department in all provinces should be looking to help, the government should do the right thing and change that rule immediately because if your spouse of 30 years is not allowed to receive some help in providing the needed and loving difficult care then most of us are doomed. Stay Public Rodney.

  • the poverty industry
    February 12, 2016 - 13:06

    This is a sad situation created by a government(past/present) that views it's own citizens with contempt & no heart. They feed at the people's troff themselves & it's ingrained that they are more important & deserving than the people that are sick along with their family. Caring for a sick/disabled person is a 24/7, 365 days a year job, the work is never ending. No family should be driven in to poverty & poor health( that also costs the system) while trying to help their loved ones cope with their illness or disability. The attitude put on the people is like this, if you aren't somebody, you're nobody & must have done something to deserve just what you get. There's a whole industry created around others misery & back door attitudes that "stick it to em". There's advisors to government, far too many government employees creating ways to save enough money for their own jobs, that in turn is lapped up by those that should have our backs not government employees backs, self-serving but not serving the people that need help. Is there something else it could be cause it doesn't save us any money! This same situation plays out with many families in our province, it's just hateful & ends up costing us more money. No wonder we're broke. BTW I speak from experience & had my own family torn apart by these very same attitudes years ago, it looks like nothing has changed in years.

  • Paul
    February 12, 2016 - 09:13

    Hi, I'm in the same situation . I have progressive MS needing help but my spouse has to look after me and our kids. 24/7 with no breaks. She can't go out and work to help with the financial burden of raising kids . Homecare is more concerned about the $$$ not the health, physically, mentally or emotionally for patients and their family's. It's not fair especially for low income families who can't afford to hire help. This adds stress to me everyday which worsens MS symptomss